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Old 01-05-2011, 07:58 PM   #1
TriciaK
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Join Date: Sep 2005
Location: St. George, UT
Posts: 582
From TriciaK: Suggestions or advice, anyone??

I spent half a day yesterday at the hospital having an MRI of my head, then a PET/CT scan of the rest of my body, to see if the nodes in my right lung were shrinking or not. Since the last ca 27.29 had showed the markers rising I was naturally concerned.The markers showed around 68 in the summer of 2009, rose to 131 in May of 2010, then dropped into the 90's in the summer of 2010 after we started herceptin and navelbine, which had worked so well 5 years ago. THe markers then dropped into the 70's, but I had weird reactions to the navelbine so we have tried just herceptin since then. The markers are up again to around 87 now. My oncologist called me tonight at 7pm to tell me that the MRI showed no brain cancer, though there is an infection in the area of my left ear.He said the PET/CT showed that the largest nodule in my right lung has grown from 14.05 by 11.5mm to 16.8 by 15.2mm. ( It was 1.8mm several months ago.) He feels we have to start a more aggressive approach besides herceptin alone. He felt the navelbine helped but the reaction was too much, so is now suggesting gemzar with the herceptin. I should have infusions every week of both, skipping one week of gemzar, but doing herceptin all 4 weeks.
My questions to you all: 1. Are we moving fast enough? (The markers have been rising pretty steadily for a year except while briefly on chemo plus herceptin. Herceptin alone doesn't seem to be doing it as the markers are rising again and the largest nodule is growing) 2. Is the nodule size and growth a lot more worrisome? Should we start the new chemo + herceptin immediately? (I had a 3-week herceptin a week ago and the dr. is planning to wait two weeks before starting the new H+gemzar routine. Waiting makes me (and my husband!) a little nervous.) 3.Is gemzar the best chemo to add? Navelbine seemed to work but the side effects this time were horrendous and he is hoping the gemzar will work as well with less side effects.4.What side effects have any of you had with gemzar? 5.Should we try something stronger, and if so, what?
I am having trouble breathing (fluid in lungs have been a problem but the PET/CT showed the fluid is not as bad as it was two months ago when I had pnuemonia. I also have a lot of fluid in my ears which makes it difficult to hear). I am also very weak and dizzy and have no appetite. I frequently get nauseous and experience vommitting and diarrehea. (Also chemo brain as I have forgotten how to spell!!)
You all know the uncertainty and confusion of facing new mets and knowing just what to do. My oncologist is very respectful of my ideas and wishes, but at this point I don't really know what they are! Except to lick this new (4th) round of BC as quickly and efficiently as possible, as I have the past 3 rounds.
You have all been through so much and are such warriors I would appreciate any thoughts or advice or opinions you may have. I've been strong for over 25 years fighting BC but feel a little more shaky this time, because of other problems added to it, like age, heart problems, fibromyalgia and painful scoliosis from cancer in the spine 20 years ago). I'm not ready to give up yet, but want to go for the fastest most efficient treatments. I will still use self hypnosis, a good diet, positive outlook, etc., which have worked for me before.
I am so grateful for all of you and for any suggestions, comments, experiences and advice you may have. I can stay on herceptin as long as my heart stays where it is now (50 ef) but what chemo to add is my biggest question. Thank you in advance for any word of advice or help, and especially for the love and concern and prayers you have shown to me and others.
I am hoping 2011 will be the best year ever for all of us. There is so much hope! Love and hugs, TriciaK

Last edited by TriciaK; 01-05-2011 at 08:50 PM..
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